How Bad is Bad?
Appendix A of Testimony before the CFSCC, May 1997
Statement by Mary McKinney Schweitzer, Ph.D.
Presented to the second meeting of the
Chronic Fatigue Syndrome Coordinating Committee (CFSCC)
October 22, 1997
My worst stage: Total bedridden. With slight paralysis (one side). Bringing up a card becomes heavy task. Duration of the worst stage: About for 8 months. I had the worst stage 3 times in my entire 18+ CFS life time.
I have 2 masters and cannot balance my checkbook. I am an engineer and cannot remember how to do simple math. I changed my signature to one that you cannot read as I have misspelled my name so many times. My IQ plunged 40 points. I still know what I was and what I am.... and I hate it.
The WORST days are unrelenting pain, abdominal discomfort such that eating is an Olympic feat, exhaustion so extreme that I merely move SLOWLY1 from one recumbant position to another. I can't concentrate enough to read a book, can't remember words in conversation or remember how to spell things when writing, can't do any task that requires effort of the least kind. I still find the disease completely unpredictable, and this is one of the worst parts of it for me. I cannot plan anything, though I try. I do not know what is going to make me feel worse or better--it seems to me completely arbitrary. I battle fear over my future, not just in regards to finances, though that offers an appalling prospect, but in regards to my productive life. Though I still make some art, my level of production is nothing like it was. I used to be able to stand for six hours, at least two days running, to work on large pieces. Now, two hours is my maximum, then I have to rest for a week or longer. The other WORST part is the difficulty in finding adequate medical care, with doctors who will listen and treatments that I can tolerate and which will help. Oh, yes, and which I can afford.
Some of my worst days are right now.
What were you like at your WORST stage?
I was in hell and I couldn't get out. Every cell in my body, every muscle every bone, every corpuscle, EVERYTHING reeked with pain. Whether standing, sitting or lying down, whether moving or being still, every position I was in, there was pain and bone-weary exhaustion. I begged for sleep but, it would not come, I could only lie there in pain, in hell, and I couldn't get out.
How long did that stage last?
(There is no time in hell.) I feel this way after I have moved my body around as a regular person with a busy lifestyle would (eg: working, shopping, laundry, housecleaning, etc). It could last hours, days, weeks.....it's a constant balance between how much I move and how much pain and exhaustion I'm in.
By last September, I literally crawled on all fours up my stairs, couldn't keep myself clean, hadn't cleaned my house in months, lived on TV dinners (I had been a trained Chinese cook), was in financial ruin, had lost a marriage (not necessarily a bad thing ;-) and was completely alone and seemingly helpless.
- the first really bad year when I was sleeping for 15-20 hours a day, merely getting up to brush my teeth sending me reeling back to bed in total physical collapse for hours and hours.
- the year when my brain got foggier and foggier, ability to focus, remember, to reason, to organize fading noticeably day by day.
- the months at a time when I feel totally worthless, unable to even keep my house relatively picked up, unable to concentrate on magazine articles or vapid sitcoms, brief phone conversations sending me to lay down in total quiet for hours.
- overall daily worsts are being unable to listen to music that used to bring me such pleasure due to its now sounding more like clashing discordant noise; unable to draw or paint or even hand write due to increasing pain and loss of motor control; unable to visit more than a few minutes with friends or family due to being unable to follow conversational threads, losing my way when taking, the strain of trying to keep up tiring me out for days afterwards.
Melissa Kaplan Age 42 PWC 8 years Disabled, twice denied by SS No insurance and no more savings funds to buy the drugs and supplements prescribed by my physician that might enable me to function better, maybe even enough to return to some sort of job part-time even if I can't return to my old $80,000/year 50-60 hour/week job...
CFIDS is now a major part of my life story, having been seriously ill with it more than 10 years....most of them bedridden. I have owned several businesses, raised kids, cared at home for a dying husband and a new baby at the same time, wrote regular columns for the San Jose Mercury News, had a radio show, spoke many times before large groups for various causes. Now I live from day to day, depending on IV lidocaine to keep my pain down to a dull roar and my speech from being too slow and difficult. I use a wheelchair, use oxygen at times, hold family meetings on my bed and have tried nearly every drug, supplement and therapy known to man both here and in Mexico. I seldom go out or talk on the phone.
One skill I maintain is my ability to write with reasonable clarity directly after receiving an IV. I was a concert pianist who often needs help in cutting dinner meat on my plate. I was an actress, ran a theater company, sang and played leading roles very often and now speak with a delayed stutter at times and with much less style and finesse. I am still, I must modestly admit, very funny at times. My spirit and humor are intact. My husband takes care of me, runs my IVs and works miracles to pay for everything. My daughter was raised from my bed and even while in college she sits there with me, discussing the meaning of life and patiently going over and over it so I can understand it. I wrote my senior thesis in college on existentialism in Sartre and Camus but can no longer discuss it.
Extensive testing at UC Irvine shows a drop of at least 20 points in my IQ and clearly demonstrates that I am seriously disabled. I spend most days in bed alone, waiting for my husband to return home at 7 or 9 at night and then to prepare dinner and start my IV. I am incredibly lonely, bored, sad and often hopeless. My life is in ruins and to some extent so is my husband's. Every few months we travel to see my doctor, about 5 hours south of here, so that he can try more new drugs on me. It is a big ordeal to go, but he is the only doctor I've found who knows what to do, and I've seen some of the best. I've had four surgeries, multiple MRI's, scans, physical therapy, mental therapy, diet therapy, various acupuncture therapies, chiropracty, chelation therapy, live cell therapy, intuitive healing, many types of body work, prayer chains, spiritual guidance, meditation, crystals, aromatherapy, on and on. We moved out of our large house because it was found to be highly contaminated with stachybotrus mold that made everyone ill and is thought to be the trigger for my disease. The house will require extensive, very expensive rehabilitation for us to rent it out. My husband works multiple jobs to pay for my care, our small rental place, and house repairs.
His health is now in jeopardy because of this. We have had no vacation in many years, have no social life and see very few people outside our immediate family and medical care givers.
Return to Text, CFSCC Testimony October 22, 1997
Go to Appendix B: The Need for Diagnostic Criteria for before "The Crash"
Go to Appendix C: Disability Struggles
Go to Appendix D: Three PWCs
Go to the CFIDS/M.E. Information Page
Mary Schweitzer's Essays on CFIDS/M.E.
Mary Schweitzer's Testimony to CFSAC and CFSCC